An integrated knowledge translation approach to co-create and evaluate patient education tools on cholesterol management.

Context: The objective of CHOICES (Community Heart Outcomes Improvement and Cholesterol Education Study) is to understand how evidence-informed cholesterol management can prevent cardiovascular disease (CVD) in 14 health regions at higher risk in Ontario, Canada using a suite of educational interventions. An integrated knowledge translation (IKT) approach was used to co-create an educational tool on CVD risk, behaviour modifications for cholesterol management, and cholesterol-lowering medications. In order to further understand the needs of Ontario residents related to CVD prevention, a process evaluation was conducted through engagement with the public. Objective: To evaluate implementation quality including reach, responsiveness and usability of the patient-targeted educational tool for cholesterol management. Study Design: A 10-minute online survey was administered to users of the tool. Population: Adults aged 40-75 years who reside in one of the 14 identified regions in Ontario with higher-than-average CVD risk. The tool and survey were shared broadly in the targeted regions and participants were recruited through social media, stakeholder involvement, and market research organizations. Outcome Measures: Reach was measured by the number of participants who received the tool and completed the survey. The survey measured perceived usability of organization, layout and applicability of the tool (6-items). Responsiveness was measured by the level of receptivity and interest in sharing the tool (4-items). Respondents ranked their level of agreement to each question on a likert scale from 1 (Strongly Disagree) to 7 (Strongly Agree). Results: 230 users of the tool were recruited to participate, of which 104 completed the survey (response rate= 45.2%). Respondents indicated that the tool's content was clear (M = 6.00, SD = 1.05) and would support them as a patient seeking cholesterol related information (M = 6.00, SD = 0.99). Respondents indicated their high likelihood to recommend the tool to their personal networks (M = 5.37, SD = 1.19) and preference to receive similar information from their family physician (M = 5.92, SD = 1.15). Conclusion: Overall, participant responsiveness and receptivity to the co-created patient educational tool was high. This work enhances understanding of the benefits of co-created patient-targeted interventions to improve cholesterol management and ultimately inform the implementation of similar scalable strategies across Ontario.

EMPOWER Retinoblastoma: Engaging Patient Partners in Solving the Top 10 Priorities for Eye Cancer Research in Canada.

While it is recognized that research priorities should reflect and integrate the perspectives and needs of patients along with those of health professionals and researchers, it remains challenging to actualize such priorities into tangible research projects. Targeted dissemination is required to catalyze research on these priorities. To create awareness of and inspire action toward actualizing the top 10 retinoblastoma research priorities in Canada, Canadian Retinoblastoma Research Advisory Board (CRRAB) members developed a wide range of dissemination tools and processes. These resources, co-produced with patients, were instrumental to CRRAB sharing the top 10 priorities internationally to mobilize action toward solving them.

Making Informed CHOICES: The Launch of a "Big Data" Pragmatic Trial to Improve Cholesterol Management and Prevent Heart Disease in Ontario.

Cholesterol-lowering statin medications are a safe and effective therapy to lower cholesterol and reduce the risk of cardiovascular events. Yet physician prescribing patterns and patient adherence remain suboptimal in Canada and the United States, often due to pervasive misconceptions. The Community Heart Outcomes Improvement and Cholesterol Education Study (CHOICES) is a pragmatic, registry-based, cluster randomized controlled trial that aims to improve cholesterol management through appropriate statin use in adults and to ultimately reduce cardiovascular events in high-risk communities across Ontario. The trial uses an innovative, multicomponent intervention and implementation approach that includes audit and feedback reports for family physicians and educational materials and tools for patients.

Rehabilitation among individuals experiencing homelessness and traumatic brain injury: A scoping review.

Traumatic brain injury (TBI) is disproportionately prevalent among individuals experiencing homelessness. While rehabilitation is critical to facilitating recovery after TBI, there is currently limited information on the extent to which rehabilitation is provided to individuals experiencing homelessness and TBI. If unaddressed, this knowledge gap can perpetuate TBI-related challenges and contribute to a repetitive cycle of TBI and homelessness. This scoping review explored the extent to which rehabilitation, including the types of rehabilitation interventions, are available to, or used by, individuals experiencing homelessness and TBI. A systematic search of electronic databases (MEDLINE, Embase, Cochrane CENTRAL Register of Clinical Trials, CINAHL, APA PsycINFO, Applied Social Sciences Index and Abstracts, and Proquest Nursing and Allied Health) was conducted to identify peer-reviewed articles that met predetermined eligibility criteria. Gray literature and reference lists of eligible articles were also searched for relevant content. A descriptive numerical summary of extracted data was conducted, and qualitative analytic techniques were applied to analyze the data. Fifteen peer-reviewed articles and three gray literature reports were included, describing interventions for individuals experiencing homelessness and TBI (N = 4), rehabilitation for individuals experiencing homelessness without specific inclusion criteria for TBI (N = 11), and rehabilitation interventions that included individuals experiencing homelessness and TBI, without specific inclusion criteria for experiences of homelessness or TBI (N = 3). This review demonstrates that rehabilitation programs or interventions for this population already exist, and those that are focused on individuals experiencing homelessness are already serving individuals with TBI. Findings highlight opportunities to adapt existing rehabilitation for individuals who experience homelessness and TBI through screening for TBI, conducting cognitive and functional assessments, and tailoring interventions with multidisciplinary teams. Education and training for healthcare professionals working with individuals experiencing homelessness and TBI should be explored, including structured education and training, collaboration with a multidisciplinary team, and co-development of educational materials with service users. Research that considers the rehabilitation needs of diverse individuals experiencing homelessness and TBI is urgently needed.

Evaluation of the partners in research course: a patient and researcher co-created course to build capacity in patient-oriented research.

BACKGROUND: In the past decade, patient-oriented research (POR) has been at the forefront of healthcare research in Canada because it has the potential to make research more meaningful and relevant to patient needs. Despite this growing emphasis on and expectation to conduct POR, there is limited guidance about how to apply POR in practice. To address this capacity building need, the Knowledge Translation (KT) Program and patient partners co-designed, delivered, and evaluated Partners in Research (PiR), a 2-month online course for patients and researchers to collectively learn how to conduct and engage in POR. METHODS: PiR was delivered to 4 cohorts of patients and researchers between 2017 and 2018. For each cohort, we evaluated the impact of the course on participants' knowledge, self-efficacy, intentions, and use of POR using surveys at 3 time points: baseline, post-course and 6-months post-course. We also monitored the process of course design and delivery by assessing implementation quality of the PiR course. Participants were asked to rate their satisfaction with course format, course materials, quality of delivery and their level of engagement via a 7-point Likert scale in the post-course survey. RESULTS: A total of 151 participants enrolled in the PiR course throughout the 4 cohorts. Of these, 49 patients and 33 researchers (n = 82 participants) consented to participate in the course evaluation. Process and outcome evaluations collected over a 9-month period indicated that participation in the PiR course increased knowledge of POR concepts for patients (p < .001) and for researchers (p < .001) from pre-course to post-course timepoints. Likewise, self-efficacy to engage in POR increased from baseline to post-course for both patients (p < .001) and researchers (p < .001). Moreover, participants reported high levels of satisfaction with content, delivery and interactive components of the course. CONCLUSIONS: The PiR course increased capacity in POR for both researchers and patients. This work enhances our understanding of how to design useful and engaging education opportunities to increase patient and researcher capacity in POR.

Patient-oriented research (POR) is the meaningful inclusion of patients as active contributing partners in research. In meaningful POR, patients are engaged and valued as contributory members of the research team throughout the research process, from developing research questions, participating in research activities, to sharing new research findings. In Canada, POR is recognized as an important component of research and many healthcare institutions aim to engage patients in their work. However, there is little guidance on how patients and researchers can effectively participate as equal partners in research activities. To address the need for POR education opportunities, we launched Partners in Research (PiR), a 2­month online course for patients and researchers to learn how to conduct and engage in POR. This paper describes the design, delivery, and evaluation of the PiR course, with a focus on the following objectives: (1) To assess the impact of the PiR course on participant knowledge, confidence, intentions and use of POR (2) To determine the quality of course design and delivery and its ability to achieve learning objectives (3) To identify factors that limit and facilitate participation in POR The findings from the evaluation show that the PiR course was effective in increasing knowledge of, and confidence in POR concepts. In addition, the course was well-received, with participants reporting a high level of engagement in course content and activities. Overall, this work supports our understanding of how to design useful and engaging opportunities to increase patient and researcher capacity in POR.

The Canadian retinoblastoma research advisory board: a framework for patient engagement.

PLAIN ENGLISH SUMMARY: Retinoblastoma is a rare eye cancer that occurs in one or both eyes of infants and young children as a result of errors in the RB1 gene. There are approximately 2000 retinoblastoma survivors in Canada. Those with the heritable form of the disease are at risk of passing the gene to the next generation and developing a second cancer. Many retinoblastoma survivors and families therefore interact with the healthcare system throughout their lives.The retinoblastoma community has a longstanding history of engaging patients in research, however without any formal process. The literature establishes benefits to patient engagement such as research results which are more applicable, credible, and transparent. Building on the established interest among stakeholders, the Canadian Retinoblastoma Research Advisory Board (CRRAB) was established in 2016 to foster sustainable and meaningful collaboration between patients (survivors and family members), advocacy groups, healthcare professionals, and researchers in the retinoblastoma community.The aim of this study was to evaluate the utility of CRRAB in fostering patient engagement in research. Members of CRRAB were surveyed to uncover their attitudes towards and experience with patient engagement in research. Participants perceived CRRAB to provide diverse and accessible opportunities for patient engagement in research and perceived their participation to have a meaningful impact. The results suggest that CRRAB promotes patient engagement in retinoblastoma research, and provides direction to sustain and enhance future patient engagement. ABSTRACT: Background The Canadian Retinoblastoma Research Advisory Board (CRRAB) is a multidisciplinary group, including patients (survivors and family members), advocacy groups, healthcare professionals, and researchers, which aims to establish and sustain patient engagement in retinoblastoma research. The purpose of this study was to describe the development of CRRAB and to uncover members' understanding of and attitudes towards patient engagement in research. As well, to determine their level of engagement.Methods Retinoblastoma patients, healthcare professionals, and researchers provided leadership to co-develop CRRAB. CRRAB members were surveyed by pre- and post-test questionnaire at the 2016 Annual General Meeting to assess experience with, understanding of, and attitudes towards patient engagement in research. A second questionnaire was administered before the 2017 CRRAB meeting to assess awareness and perceived impact of CRRAB activities, and individual engagement in research. Data were analyzed by descriptive statistics and paired t-test (for pre/post-test). Thematic analysis of chart board discussions at both meetings revealed the joint goals of CRRAB and reasons for and barriers to patient engagement.Results In 2016, 21 individuals participated and self-identified as patients (11, 52%), healthcare professionals (6, 29%), and/or researchers (7, 33%) (participants could overlap stakeholder groups). Overall, participants believed that research is relevant to all stakeholders and that patients can have meaningful impact on research. In 2017, 35 individuals participated and identified as patients (21, 60%), healthcare professionals (9, 26%), and/or researchers (8, 23%). 94% of participants were aware of CRRAB initiatives and 67% had participated in at least one over the previous year. Participants perceived that CRRAB provides diverse opportunities and increases accessibility for patient engagement in research, and perceived patient engagement to have meaningful impact on retinoblastoma research. Chart board discussions revealed that participants wanted to be part of CRRAB to increase knowledge, support innovation and patient engagement, and be part of a community. Members most commonly faced barriers including time and cost restraints.Conclusions The results of this study suggest that CRRAB has supported the engagement needs of patients affected by retinoblastoma, and has provided an opportunity for engaging patients in retinoblastoma research. CRRAB will continue to be used as a framework for patient engagement, with improvements based on participant feedback.